Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.

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Sunday, February 6, 2011

I have had way to much contact with our health care system since last summer. First i had urological surgery and then a severe pressure sore I am still dealing with. In the last few months all those I have met that work in the health industrial complex agree the American health care system is deeply flawed. The words I have heard the most to describe our health care system are grossly dysfunctional. Few agree with me that we need to somehow move toward a single government run system. Even fewer like what Obama has proposed. When I state my endorsement of a single payer system the reaction is often one of silence or polite indifference. A few will venture a negative comment about socialized medicine while others point out that the government also runs the department of motor vehicles and query "how is that working out for you". I usually reply that I trust the government more than I trust health insurance companies and policies that are designed not be utilized. This exchange is pointless as nothing is accomplished. I do not pretend to have the answer to our current health care crisis--and there is no doubt the word crisis applies. I do know something has to change. I feel very strongly about this because I am virtually uninsurable. Insurance companies have the right to make money but we Americans I believe have the right to be able to afford adequate health insurance. Our government has utterly failed to protect half the population and people like me that are locked out of insurance industry. There is no question to me that health care is a basic human right. From an economic point of view I understand health insurance companies are designed to make money--this is why such corporations exist. But the health care industry must be regulated in a way that all Americans can access the system equally. Too many I know fear getting ill. People fear illness because they worry about the costs involved. This is just wrong.

What we need is a massive cultural change when it comes to how we perceive the health industrial complex. We need health care professionals to become human again. I think it is just too easy for us to complain and not demand social change. When I was ready to be discharged from the hospital in the Fall my choices were stark--go to a nursing home or get a clinitron bed and have family care for me. This was not really a choice. The surgeon following my care said simply "that's the way it is, there is nothing I can do". The discharge planner did nothing--explained what was and was not covered and told me "that's all I can do". Sorry but that is not acceptable. We Americans value personal autonomy almost as much as we value life itself. This throwing up of hands and saying "that's the way it is"is not acceptable and must change. There is much debate within bioethics about the degree to which doctors advise their patients. Doctors now routinely lay out the options as though we are playing the old TV game show Let's Make a Deal. This is done under the belief that patients are the best person equipped to decide what is best for them. In theory this is correct--in theory. But how many people understand the nuances, meaning, and ramifications of those decisions. In the end we end up feeling very much alone and isolated. Most of us die in a hospital, unaware and medicated into oblivion. For the vast majority unfamiliar with hospitals they are unable to know what is the "right thing to do". I am not suggesting we put such decision making back into the hands of doctors and the health care industry. What I am suggesting is that we need to have health care professionals empower people to navigate a complex cultural system that is not only vastly different but scary. In my estimation few doctors are capable of doing this. They are in many instances oblivious to the needs of those they are charged with healing. Patient care representatives are no better--they are adept what deciphering what one is and is not covered for by a given insurance company. They do nothing more and nothing less. Their job is to get a person out the door without any fuss. What happens when they leave the front door is of no concern.

I am naive? You bet. But I am also hopeful that if enough people get fed up and refuse to be abused by health care industrial complex change will be forced upon corporations that simply do not care one iota. I know this because I am spending much of my time fighting my health insurance company and the wound vacuum company KCI. If I have learned one thing it is that these companies do not care one iota. They are nothing short of evil. They want one thing and one thing only--payment. KCI has earned my particular wrath as they are stunning in their disregard for the humans that use their products. Those that I have spoken to at KCI have no heart--no soul. The corporate mentality has infected the people that work for KCI to the extent they have no empathy. None. To me this is a symptom of a much larger grossly dysfunctional health care industrial complex. This complex can be changed. We must demand it. How we do this I do not know. I do know we as are all cultural systems capable of such change. Look at the newspapers and read about what is transpiring in Egypt. I for one never thought such change was possible. A friend of mine has written about the situation in Egypt and noted we have had American Pharaoh in place for decades. If Egyptian citizens can rail against the government and force such a cataclysmic change i posit the question--why can we Americans not demand comparable change in our health care industrial complex?

Friday, February 4, 2011

Hailing a cab in New York City should be easy. It is easy for all those that are bipedal. If you ever want an exercise in frustration I suggest you use a wheelchair and try hailing cab. Good luck with that effort. I for one have given up. I refuse to give my money to rude cab drivers. Every experience I have had with cab drivers in the city has been overwhelmingly negative. Last time i took a cab the driver spent the entire ride telling me what a hassle it was to "help" a person like me, that he lost time "helping" me, and that they should have "special" taxis for people like me. I told this man I would be thrilled to use a "special" taxi but of the 13,237 yellow cabs only 230 are wheelchair-accessible. Gee no wonder i have trouble.

The situation hailing a cab in NYC is unlikely to get better any time soon. The city is in the process of choosing the cab of the future and of the three finalists only one is accessible. It is unlikely this accessible cab will be chosen. The city has suggested and had a stealth experimental dispatching number people with a disability could call when they needed a taxi This was in the estimation of the city a reasonable accommodation. If this is reasonable to you I think we have vastly different interpretation of the word. Now Senator Tom Harkin has backed the accessible taxi. This is great but for one thing--Harkin is from Iowa not New York. I applaud Harkin's support but doubt it will do much good. I wish I had an answer to the problem of hailing cabs in New York and other cities such as Chicago. I do know other cities present no problems--mostly Western cities such as Seattle and San Francisco. I also know cities like London present no problems either. Perhaps we need to study the issue of why--why is this a problem in some cities and not an issue in others. In the meantime i will continue to use MTA buses that provide slow but reliable service.

Wednesday, February 2, 2011

This is what I look at from my bed in the living room. My house is oriented to the northwest so the sunsets are wonderfully colorful. I have a set of three six foot sliding doors in the living room that open up onto a deck. My house is on a ridge and I can see for miles. Every day I look out my window I realize I am a very lucky man. I may be stuck inside and house and bed bound but it is a beautiful place to be stuck.

We are having yet another snow/ice storm. For the first time my roof had to be cleared of snow. My brother spent hours on my roof yesterday shoveling snow. Thankfully I have no gutters and a slight slope roof incline. Of course this is easy for me to write as I was not the one on the roof. Schools are closed today and I have not seen a car go by since I saw a plow go by at 5AM. How I love winter! My love this year is tempered by the fact I have been a mere observer this season. Next year I am going to ski to my heart's content. Who knows I may even get to ski in late March. Ah, dreams on an icy day.